Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

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WarriorGal 04/17/2016

I was diagnosed with SS in 2009. Symptoms have been managed well with Evoxac for mouth dryness, Restasis and tear duct plus for eye dryness.

I currently seem to be in a really really bad flare up. I never knew a mouth and throat could get and stay this dry. There is not enough lozenges or gum or drinking water to prevent my lips from sticking to my mouth and being unable to talk.

It's beyond discomfort...and I don't know what to do!

Doctor keeps suggesting new lozenges or gum, but that BARLEY gives me relief while they are till in use!! It's like putting a band aid on a severe hemorrhage.

Any suggestions appreciated.

WarriorGal 04/17/2016

PS My RA is also in Flare. May be related. I've bene off Orencia for 3 mos due to fighting a colon infection.

joham 04/18/2016

Im sorry you are suffering.Myself I am going through a pretty bad flare up as well right now.Ive got bad eye issues and extreme fatique and my throat is real raw.Its hard to swallow and I have bad acid reflux on top of it.I also noticed that I have cold sores on my right tonsil which hurt as well.
As for the mouth dryness I had it real bad last fall and no matter what I did it didn't help.I just had to patiently wait it out.
At the moment I am just trying to eat as much omega 3 as I can.I have fish 3 times a week for lunch and I do coconut oil daily.I also drink flaxseed tea every night before bed.Besides I use DGL lozenges which seem to work a little bit for my stomach/esophagus issues.Maybe you could try these?All the best and lets hope things will soon get better for us!

MButterfly 04/22/2016

I take all of that (save the orencia) for SS/Lupus. And hydroxychoriquine and steroids.

If you haven't tried those last two...you might give them a try, however the plaquenil CAN hurt -some- peoples' stomachs, so talk to your docs.

I'm sorry you're going through this...

WarriorGal 05/02/2016

No relief...just gets worse and worse. Losing a pound a day because of difficulty eating. Very difficult to talk.

All my Sjogrens specialist suggests is lozenges, gum, mouth spray. helps for a second or two...

My top lip has gotten stuck on my upper teeth! I felt like the kid in the Christmas movie who got his tongue stuck on the flagpole.

I have sore throats. And cough up phlegm -- I get some relief for that with Mucinex.

Second only to the excruciating pain I am in from mt RA flare up - is THIS! Between the two I am on the verge of suicide.

smileshelp 06/11/2016

WarriorGal - my heart hurts for you. Some days are beyond what we can bear. Please contact someone for the emotional support you need to help you make it through this flare. Use the hotlines this site has posted. http://www.dailystrength.org/help/crisis-resources
Suicide is not the answer. This world needs you in it.
Prayers for your struggles to feel more manageable.

esthelamoore 08/29/2016

Hello I know this post was a few months ago, but I hope you are better now. What helps me get through a flare first to know God loves me dearly, second ti know I need to be strong for my family and lastly and very very important is to know there is a better day ahead of me and even know Im not sure how long that better is gonna take I know is coming.. Please if you need a friend I can message you my personal info... Hugs

PeteM3 09/14/2016

WarriorGal - I'm jumping in late. I was in a spot like you were feeling in July - an IV injection of a corticosteroid helped big time. It didn't make the symptoms go away, but certainly got things controlled enough so I could start eating regularly and getting sleep at night. It did give me some other problems (I only get really dry eyes when on corticosteroids), but some good, thick eye lubricant took care of that.

WarriorGal 09/14/2016

Thanks all! I am much better now. I discovered that prednisone helps SS!! Many RA drugs do. My doc said they are in the process of getting Humira approved for SS. I wa sin this flare because I had to go off my RA meds for an infection - LONG story! But I'm back on it now and doing better.

Tom59 09/27/2016

Biotene mouth spray......enjoy !

WarriorGal 09/27/2016

Biotine does absolutely NOTHING for me! At best it gives a moment of relief. I much prefer ACT Dry Mouth Lozenges. But in a FLARE UP, the only thing that helped was Prednisone! When I am not in a flare, Evoxax (RX) 3 times a day helps with lozenges and mouth spray in between.

I had a salivary gland scan and my salivary gland is basically non-functioning., Mouth sprays do not help the production of saliva! Evoxac does.

stundedagain 06/28/2017

I did some research and came across Xylimelts from my local drug store! It is Xylitol. These are for day or night. If I'm having a really bad day I use them during the day. I NEVER go to sleep without them or I struggle. You place them between the gum and cheek and it sticks. You can take 1-2 at the same time. I fluctuate depending on the dryness. I do not recommend the store generic. They leave a slimmy mess in your mouth in the morning. Bought it once and never again! Of course NO alcohol based mouthwash. My Dr said use one with fluoride since Sjrogens can decays teeth.

DLRgirl 10/21/2017

There just are times when it's too much, that's how I feel right now. Rashes, pain in my eyes that wakes me up at night, dry mouth, lip sore, just don't want to be around anyone right now. I will snap out of it, I always do, what choice is there.
The muscle and joint pain for me are easier to deal with.

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